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mark m

strange changes to my clusters

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Hello, first a few bits of info: I am plagued by daily headaches, Migraines 2 to three a week but less in summer months. My normal schedule for clusters is every three years normally start in October and last approximately 10 weeks. But for some reason They started 1 week ago and instead of mostly at night they are during the day and other oddities include the things that always helped such as hot water on my head and Oxygen don't seem to help much. And in the past I never got a migraine during my ten weeks of cluster yet today I woke with a migraine then 3 hours later it went right into a cluster with the migraine symptoms included.and the clusters always started over and in my right eye yet now they are into my right ear and jaw more then my eye. Is this something others may have experienced?  I am going to see my neurologists Monday I will post what he has to say. Thanks Mark  

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Hi Mark,

My husband suffers from CHA's, and has the same symptoms, though the pain around his right eye radiates into his jaw and neck, even sometimes to the top of his head. He has used Bella Donna ear drops with some success, and uses peppermint oil for temporary pain relief to his jaw and neck. By temporary I mean several times a day. He also uses Magnesium for the CH, and was told to by a Neurologist about 5 yrs ago. He takes Calcium/Magnesium and zinc sold together as 1 tablet. The calcium helps the body absorb the Magnesium. This really had the headaches backing off, but you should research it and ask your doctor also. Keep posting your progress.

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Mark, note that effective dosages of verapamil for CH can go as high as 960mg/day (sometimes even more). That's more than many neurologists are going to prescribe (more than is used for the primary purpose for which verap is prescribed, treating high blood pressure).  

Is your O2 working better now?

Are you taking anything else?  For example, the D3 regimen that helps many people: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708   

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Mark Verapamil did nothing at what dose did you give up. It quite often takes 800-1000mg a day to see results. Lithium is a second or third line therapy. Drop Boatman a note he recently tried lithium. The thing is you can’t bust when you’re on lithium so you may see less people that use it here for that reason alone. 

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Mark,

Freud means that many people here are using psychedelic medicine to treat their cluster headaches.  We call it "busting."  There are many prescription drugs that interfere with the psychedelic drugs, and they must be avoided when treating with psychedelics.

From what I have read, some people respond to lithium.  The first line preventative is verapamil, and lithium is a second or third line treatment.  Everyone is different, and lithium might work for you.  It certainly is not out of left field, and it doesn't surprise me that your neuro wants to go to lithium if verapamil didn't work.  However, I have never taken lithium and would leave discussion of that to people who know more about it.

Whether you are busting or not, oxygen is your first line abortive.  You indicated in your original post that it did not help much.  There are some people who don't respond to oxygen, but the vast majority do.  And it is a real life saver for a lot of people.  There are CH sufferers out there that only use oxygen, no other abortives or preventives.  Also, the best practices regarding oxygen have changed over the years. Most of those changes involve an increase in the flow rate. 

Oxygen should be used for 15 min. at onset of attack at a flow rate of AT LEAST 15LPM (25LPM is preferred) through a non-rebreather mask.

If you have not had success with oxygen, and you have not used it with those flow rates or mask, you really should try it again.  Many people who thought oxygen didn't work for them ended up finding out it did work, but they were given bad instructions by their doctors.  This happened to me, and when I got it right, my whole life changed. 

 

 

 

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Oh ok well I can't even try that stuff if I wanted to because I am a disabled veteran and the VA does random drug testing for people on bp meds or pain meds. But Thank you for the reply. I am still using oxygen and just started using 15 psi because of reading this forum and it helps now but the VA does not give me the non rebreather masks so i ordered one from another site for clusters. Thanks for replying, Mark

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I’ve suffered with CHA for 20 years now started when I was 18 now I am 38 . Mine used to be horrible when I was younger but the older I got the less they lasted now only 30 min attack 1 a day and 1-2 a night oxygen helps stop it if I can catch it before it builds up. Magic mushroomed is the only thing I’ve tried that stops the cycle completely for a few years . 

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Hi Mark,

To come back to your initial question from 2018, what you experience is perfectly normal I think.

As MoxieGirl already stated, symptoms are different for every sufferer and they constantly change over time. And the migraine-CH combo can make them behave really bizarre.

I was a heavy migraine sufferer since I am 10 years old (now I am 49) and got my first CH at 43. Since a year (probably due to age) my migraine attacks have strongly diminished but when they were strong I always had the one triggering the other. When the migraine reached a certain threshold, it would trigger CH attacks. CH is on the right side and migraine was also on the right side. Now for a year, the migraine suddenly switched to the left where it is still but far less strong. It does not give the nausea and photophobia anymore and very often, it is so light that just one or two Excedrin are sufficient. CH is now alone on the right side but still behaves in a very migraine-like fashion. They not cycling like CH but like migraine which are 2 to 3 days with subsequent attacks every hour and then one or two week rest. So yes, my CH really come in clusters but very short ones of only a few days that are very intense with attacks that follow each other in rapid succession. I also have a lot of background pain (shadows) around 16 days a month but no nausea.

Fullness in the ear is my main autonomic symptom (apart from restlessness). I don't have the tearing or nose congestion very often. I remember that my migraine attacks also started with fullness in the ear and the ear started to get very hot and became red, like glowing up. This is still the case with my CH. Shadows are OK as long as they are in the eye, but I know when the ear start to get full, painful and get hot, it is going to get serious and a new batch of attacks is ready to make their entry.

In ICHD-3, fullness in the ear is now listed as alternative criterium:

image.png.4266dfa2de5ddf59bac65bc1dab5b6dc.png

Now they keep migraine and CH as two separate entities and many people will say that doctors who talk about cluster-migraine are incompetent. however I am still convinced it does exist in some people as I am experiencing it myself.

Previous week I received a link from Batch to a very interesting and recent study where they at least now recognized the existence of these blend migraine-CH types:

"...and it has been suggested that this treatment could have greater responses in migraine patients with cranial autonomic symptoms [157] or migraine-cluster and cluster-migraine variants (these rare phenotypes are not included in the ICHD-3)." 

So in short, if you have the cluster-migraine combo, be prepared to expect any kind of weird behavior in your condition and a strong tendency for the one to mimic the other or even to blend.

Hope that helps !

siegfried 

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I would like to know if the oxygen generator machines work as good as the bottled oxygen because I am retired and myself and my wife would like to do some traveling both by air and by driving in the near future and the machine is very small and I can take it with us. Thank you, Mark

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The oxygen concentrators do not put out enough pure oxygen to help abort your attacks. Concentrators will put out about 5 or 6 lpm max, you need up to 25lpm with a larger reservoir bag.

You can make arrangements to have oxygen delivered to your hotel or you can pick it up at your destination but it will take a lot of calling around to make sure you get what you need for your vacation. I went on a cruise last year and was able to have o2 tanks delivered to my room on the ship. I had to tell them how many tanks I wanted and it was use it or lose it, no refund for unused tanks.  

You will need a prescription to show or send to the company you use at the destination you are going to so you might want to make a few copies to keep on hand. 

Edited by FunTimes

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On March 1, 2019 at 2:16 PM, mark m said:

I would like to know if the oxygen generator machines work as good as the bottled oxygen because I am retired and myself and my wife would like to do some traveling both by air and by driving in the near future and the machine is very small and I can take it with us. Thank you, Mark

I was just out on a months vacation and took a concentrator that put out 10 LPM @ 85 % o2. It did abort for me. Took a little longer than a tank.. maybe 15 mins., but it worked. Take your O2ptimask that makes all the difference. I also had an M tank in the car in case I needed it driving.. which I did several times. Like Funtimes said, if you fly to a resort it's very easy to have tanks delivered. FunTimes... Thanks for the info on the cruise. I have one scheduled for May. I should be over this cycle by then, but if not it's nice to know I can have tanks on a cruise. 

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I am already on the regiment and it has helped me a lot although I still get clusters they are not as intense as they once were. My doctor is doing botox injections next week for the migraines and he is hoping it helps for the clusters too.

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On 2/26/2019 at 10:35 PM, mark m said:

Oh ok well I can't even try that stuff if I wanted to because I am a disabled veteran and the VA does random drug testing for people on bp meds or pain meds. But Thank you for the reply. I am still using oxygen and just started using 15 psi because of reading this forum and it helps now but the VA does not give me the non rebreather masks so i ordered one from another site for clusters. Thanks for replying, Mark

Standard drug tests do not look for mushrooms. I never heard of anybody failing a drug test over mushrooms. They saved my life last year.

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I have to say this: As some of you have read I have both migraine and cluster headaches. So this is my recent report: I am on the vitamin D regiment and have been for a few years however in the past couple of years my clusters have changed as I said before but this year is the worst yet. I am now experiencing clusters then due to lack of sleep I wake up with a migraine ,on top of this my clusters are now with severe light sensitivity. Also last night I started with a cluster around 8 pm I am out of imitrex so I did the oxygen on high for quite some time then went to bed even though I still had pain in my head. approximately midnight I woke up in agony and my wife took me to the ER. The ER gave me a shot of imitrex and toradol and sent me home. I went home and went to bed. I have had pain in my left temple all day.  I would try other things but being me I have no idea where or how to get such things.I really am tired of these damn things.  My email is mark-mitch@hotmail.com if anyone is interested

Edited by mark m
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I have both migraines and clusters. I can have a migraine by it’s self but never have a cluster without a migraine. I can have a migraine for days and then I start getting cluster events during the migraine. My cluster attacks are quite different because the hit typically last for 3 to 5 hours with 30 to 60 minutes between hits. The longer the hit the longer time between  the hits. I know when the attack is over when the migraine goes away. It could be a day or week or two than it comes back again. 

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Thank you for your answer-sometimes even after reading others stories it still feels like I am alone in all of this. Thanks again for helping to not feel this way.

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